facing surgery, advice?

[marthak]

I asked previously about the hospital, but I would like to ask about my child since reading your posts you all seem to have excellent well-informed opinions. I have a daughter, 15 1/2, adol, idiop. scoliosis diagnosed at 12, wore her brace 20 -22 hours per day for about 20 months until her growing stopped. She is atheletic, active, has a great attitude, wonderful grades, works her tail off and sadly, two positive change xrays in a row over the last 18 months. She has 2 curves and a small developing neck thingie. Her lumber curve of about 30 or so is compensatory, but her thoracic curve is 46 degrees (moved from 41 to 46 in 10 months). Her gait is changed noticeably, more of sideways walk, looks like a big old limp. She's never had back pain, but for 2 years her left lung has been compromised, her asthma has gotten worse, and she has had pnuemonia 5 out of the last 6 years. Increasingly she experiences hip pain on the left after running hard and she uses a lift to help with the functional inequality in her leg length. She has a very narrow rib cage so her rotation and curve in the spine are gradually shrinking that left lung and the space for her heart.

So that's the scoop. At our hospital and with Dr. Policy the recommendation is at 50 degrees, but she stopped growing 18 months ago and the curve progressed about 8 degrees. He said its the 2 positive xrays plus her history that tell them that she is in that tiny tiny part of the population that has a curve that just doesn't want to seem to quit. Next year is her junior year, so its either surgery this summer or next summer.

Here's what we have done, researched the hospital and Dr. Policy. Calls in to pediatricians, neurosurgeons and spinal docs have provided a second opinion appt at Stanford, and confirmed that Dr. Policy is not just a nice doctor with a great attitude (never pushed surgery ever before), but he is well-respected. We also have a pulmonary doc lined up, cranial sacral work lined up (she already received some plus jin shin and acupressure over the last 3 years), and we have talked to her school and the teachers. Everyone is okay with surgery this summer or next summer or not at all.

Everyone except us. It's hard to look at her and think she needs surgery, yes she has a rib hump, yes its tough for her to breathe sometimes, but she looks great. But on the other hand, its been progressing in the brace and outside the brace for 3 years since we found it in the mid 30's range (thor. curve) and it doesn't seem to stop. If she already has lung involvement and hip pain and leg length inequality, how long can we wait? It seems like its about more than degrees of curve, but also about what other systems are involved???

What do you guys think?

- Martha

[dkopp]

It certainly is a hard decision to make. Our 14 year old daughter was diagnosed Jan 2006 with a 44* thoracic curve and started wearing a Providence Brace. At her next check up in July 2006, the curve had increased to 56* and she still had alot of growth potential. At that point we decided to do the posterior fusion and she had it done in Jan 2007. Research points to the fact that once a curve reaches about 50*, it will continue to progress 1-2 deg. each year and it sounds like your daughter's curve is continuing to progress more quickly than that even though she has stopped growing. So, even at 1-2 deg per year, in 20 years, that could be from 20-40 deg further curve progression! And, having the surgery at a later age will be more difficult to get as good a correction as you can get as a teenager and it takes longer to recover from surgery. Also, even though it is tough on the kids to miss alot of school and be out of their activities for 6 months to a year, I would imagine it would be harder as an adult to put your life on hold like that.

So, almost 4 months post-op, our daughter is feeling pretty much back to normal, just a little frustrated not able to do her normal activities yet! I do worry about long-term problems, especially since I am a Physical Therapist, although the research so far shows that the post-fusion patients don't have a significantly higher rate of problems compared to scoliosis patients that didn't have surgery.

It certainly sounds like your daughter is having problems beyond just cosmetic issues. Maybe getting a second opinion would help you make your decision. So far, we are glad we made the decision to have the surgery but it was a major decision. Good luck making your decision!

[marthak]

Thank you for replying!

We are getting a second opinion at stanford next week, so that will be additional info. I am so so so glad your daughter is doing great! It's good to hear.

Was it a challenging recovery and were there any complications with your surgery? I know they are all different, but this doctor has a great record on complications with this surgery such as pulmonary, uti and bleeding complications (very low, almost non existent and no fatalities - yay), but (there is always a but, lol) the number of unexpected or miscellaneous complications is 9% and 5% respectively, literally 6 times higher than the same complications at Stanford Hospital across the Bay. It's terrifying. This is a gigantic decision that is truly preying on my mind, so I am looking at everything I can find to help us make this choice. Thank you for just being there!

- Martha

[dkopp]

Martha,
I think it is a great idea to get a second opinion. As far as complications go, many of what they call "complications" are fairly minor - some possibilities our surgeon discussed were blood loss requiring a transfusion (not unusual for this surgery), constipation and loss of appetite. More major ones, such as spinal cord injury, the surgeon explained what they would do to prevent it. Also, when she was in the hospital, at least one of us was there day and night. Since I am more comfortable with medical issues, I stayed all nights but one. I asked alot of questions from the doctors and nurses and made sure they explained anything I didn't understand. I think that helps prevent complications, being another set of eyes to watch for anything that is unusual. She was running a fever after surgery and I made sure to question what might be going on - turns out it is common after such a trauma to the body. She didn't tolerate getting up very well the first time (at 4 days post op) but did fine by day 6. She really had much less pain than I expected and was off her pain meds about 2 1/2 weeks after surgery. She went back to school after 5 1/2 weeks, mainly because of just feeling weak and worn out.

I think you need to have a "gut" feeling about the surgeon and the hospital to feel like you have made the right decision. Deep down I feel my "gut" feeling is God guiding me which way to go! Be sure to update on your second opinion about Stanford.
Donna

[dkopp]

Another thing I thought of - have you also checked out www.spinekids.com? There is good info there too and if your daughter wants to ask questions of other kids, she can do that.

[marthak]

Thank you! Thank you!

- Martha

[Mom37]

Certainily get a second opinion. Shriners in Erie, PA has orthopedic surgeon Dr. Sanders who was our second. My daughters curve progressed rapidly, from 0 to 30 in one year, and to 60 from 0 in two years. In August, my daughter, 13, had a third opinion and we found out my daughter had a neurological issue, Chiari, causing the scoliosis and had chiari surgery in Dec. She is doing great from that condition, but has progressed to needing fusion surgery. Dr. Sanders, (seond opinion) at Shriners said no bracing would stop progression and she would eventually need surgery in the summer of last year. So then we wanted another opinion, since bracing from the first wasn't working. Our third opinion at Scottish Rite Hospital in Dallas agreed. However due to her continued rapid progression, Dr. Birch, who was the best orthopedic surgeon we have seen so far, did an MRI and detected the Chiari. His team, and another doctor there Dr. Sucato agrees that it is medically necessary for her to get spinal fusion to stop her rapid progression. It is a tough road, but do what you think you need to. If you think you need another opinion, go for it. Be persistent. We didn't want surgery, but she needs it, and not just cosmetically, but for her health in the future. Best wishes.

[Nikim13]

My daughter had spinal fusion almost 4 months ago. She is 16. I signed her up for a carepage to communicate with family and friends during the process. If you would be interested I would be glad to give you her carepage name. It has posts from her donating her own blood to pre admission testing to the surgery, recovery , post op, up until now with comments all along the way. also her before and after pictures. This might give you a better idea of the big picture. By the way ..... it was hard but she is doing great and looks and feels so much better. My email is nikim13_@hotmail.com Let me know. Good luck as you begin this journey!!! I will pray for you to feel peace about this decision what ever it might be. Niki

[Aussiemum]

Hi Martha,

Everything that I have read is that it is easier to recover from these major surgeries while young. My daughter is also very sporty and complains about hip pain. By looking at her x-rays I can see it's because when she bends to the right her rib cage which is rotated hits into her hip.
She has just been measured up for the TLSO brace which we get soon and since she's only a baby and already at 37 degrees thoracic - I'm already mentally prepared (and her) for an operation down the track. I'd rather her have it now while she still is a baby (well mine anyway) and I can care for her and she has no other worries or responsibilies then for her to wait until she's older with a job and perhaps a family to worry about during her recovery period.

Plus the surgeons can get a much better correction while the spine is still supple - as it stiffens as we age (I can vouch for that!).

All the best - keep up the prayers - God will lead you to make the right decision.

xx
Del

[marthak]

I really appreciate your comments and you being out there, normally I am so positive and I keep everybody laughing when times are difficult, but now I cry at strange times, when I'm alone in the car, or now when I am in my office at home and nobody's around.

When she first got the scoliosis I felt responsible somehow, as if I could have done something, but then she stepped up and her attitude was so amazing, I felt like it was a struggle to be sure, but so positive because of the way she approached her life. After all, its not a fatal illness, its a tough condition at times but most of the time she's totally cool with it. She looks and feels pretty good, her two curves balance her out and up until this past month it did not effect her running, (lol on the swimming, straight lines are important). Lots to be grateful for! And now with the surgery recommendation (after 3 days of yikes!), she stepped up again and said "its just a longer journey mom, but its okay to struggle". I'm so proud of her for being so strong and flexible in her life.

So why am I acting like I'm pregnant again??? Am I scared, or is a gut instinct that an eight hour surgery on the spine is a bad idea, or is it the thought of her being helpless and not being able to take this decision back later, or is it just the sadness that she will be in there and I can't be with her? I think she knows what I feel, even when I'm not sure, so I am going to let this come up when I am alone, but do a lot of positive visualization, exercise, clean my house, and write a lot. It's hard to be the mom sometimes, this is one of the first times I have parented when all the decisions look bad and I'm looking around behind me for my own mother (lol). I think in my heart I have not yet accepted that this surgery is a blessing, and I need to if its what needs to happen.

- MarthaK

[Snoopy]

Hi Martha,

My daughter, Jamie, is over 2 years post-op and making the decision to have her surgery done was the hardest yet one of the best decisions I've ever made. Jamie was diagnosed in 2003 (age 12) with a 36* Scoliosis curve and also Kyphosis (curve from front to back). She was prescribed a Milwaukee brace which she wouldn't wear. We switched her to a Boston brace and she still wouldn't wear it. Within about a year's time, her Scoliosis progressed to 46* and by this time she was done growing. We felt surgery was her only option.

The neck "thingie" you are talking about, is it maybe Kyphosis?

I asked Jamie the day after her surgery and several times since then if she regretted having her surgery and her answer has always been NO. She is much happier with her appearance. Even with a scar running the entire length of her back, she still wears a bikini in the summer. She joined a competitive swim team last year for the first time and loves it. She does everything she did before surgery including, riding our 4-wheeler; riding rollercoasters; hunting; hiking.

I won't lie and say her surgery was a piece of cake. Her surgery was long and waiting was very stressful. For Jamie, the recovery was very quick. She was in the hospital for 6 days, off all pain meds within two weeks after surgery, back to school 1/2 days at 3 weeks and full time at 6 weeks.

Hang in there, you will get through this.

Mary Lou

[marthak]

My husband and I just read your post and we really appreciate it! Thank you for telling me that it all went well and your daughter is pleased and made an amazing recovery. It does ease my mind to hear that. I don't think the scar will bother Moriah either, it will be more important for her to be back to running and school ASAP. We are having it done in the summer, so hopefully school impact will be low. Whoo! I am feeling better...yay! I'll be patient and take care of all of us. We'll deal with what comes

- Martha K

[Snoopy]

Martha,

Feel free to e-mail anytime. My e-mail address can be found in my signature.

Mary Lou

[alyssah]

Martha,

I have been in your situaton and understand the hesitation towards surgery. My daughter was diagnosed with scoliosis in Dec 2006 at the age of 11 with a T-40* and L-29*, we watched until Jan 2007. Repeat X-R was T-50* and L-34*. We opted for surgery at that time. Alyssa was obviously in her growing spurt since she has not gotten her period yet. We didn't go with the bracing, only because of her age and degree and what time frame she was in for growing. After tons of research bracing didn't seem like an option we wanted to follow. She had her spine surgery in Feb. 2007. Fused T-4 through L-1. She had a hospital stay of 8 days. She did have to have 3 units of blood. We were told to expect that. It is very scary for the parents, I think, more so then for the child. She did very well and I am glad we did it. There is no rush for surgery, however, but for us it was Alyssa's decision on when she wanted it done. She didn't want to miss sports for next year, and didn't want to ruin her summer. She won't!! June 1st she can go swimming and bike riding. Starting the fall of this year she can do all of her sports with no retrictions. Good luck to you. Follow your heart and your daughters.

Colleen

[MOTCA]

My daughter had a quick recovery, a lot like Mary Lou's daughter (see Snoopy). It was surprising, considering what she went through. The surgery took about 7 hours, rather than the 5 hours expected -- but then, the surgeon was able to get a near perfect correction! But . . . She lost quite a bit of blood -- she was given 10 units (I still wish I knew why). And she had fluid on her lungs after surgery and so was left on the ventilator for a day and a half to be on the safe side until her lungs cleared. It is horrible to see your kid on a ventilator, but I asked her afterward if she remembered it and she said no. Of course, I don't mean to scare you. These are just the three negative things we weren't expecting. In recovery her face was extremely puffy, but I knew that was normal for surgery. They didn't make a big deal of it, but they asked me if she had any allergies (maybe that's why the extra fluid?) I don't know -- seems like we didn't get very detailed answers to some of our questions. She perked up as soon as she was off of the heavy drugs. She wanted to go back to school part time pretty quickly -- I think it was 2 1/2-3 weeks after. But she did tire easily for a few weeks.